I think every chaplain remembers her/his first family meeting. Mine was with a family in conflict over an end-of-life decision. Everything I knew about these difficult decisions had come from my classwork. I had heard of brothers coming to blows in the hospital corridor over disagreements. Anticipating that things could get ugly and tense was one thing. But when I was called to the family meeting, as the on-call chaplain, I knew I was about to become involved with a family and witness first-hand the emotional turmoil and suffering.
From my training, I gained an appreciation for the importance of being prepared in advance, for end-of-life care. I designated my Health Proxy, thought about my end-of-life concerns, and listed my treatment preferences on a Living Will form. But when I tried to get my 89-years old mother to do the same, she complained that it was too morbid a topic. I think she may have said that I was too morbid − either way, hers was a common dismissal.
Ironically, the case that required my support at the family meeting involved a patient who had done everything “right.” Fortunately, Mr. Daraturo’s paperwork, Health Proxy and Living Will, was completed well in advance, and neatly placed in his chart. But the complexities of this case came from his unique family situation. For me, the complexities would also include the questions of the role of advanced technology and God.
With all the heavy questions, I planned to stay quiet at the meeting and learn what I could. I wasn’t the chaplain who had been following the patient. There was another chaplain on staff doing that. When I arrived, I asked the unit coordinator to explain briefly what was going on, and she brought me up to speed.
Mr. Daraturo was a 65-year old Nigerian “tribal chief” who had suffered a long illness. At this point, he had been on a respirator for life-support in the Medical Intensive Care Unit (MICU) for more than two months, and officially declared braindead. Prior to hospital admittance, he had been seriously ill for two years, while living with his second wife, Jan. He had designated Jan as his Health Proxy, and she held his Living Will, in which he clearly indicated that he did not want to remain on life-support under any circumstances.
However, Mr. Daraturo had three adult children from his first marriage, and they were arguing with Jan over whether or not to remove the respirator that was breathing for him. Despite the legal paperwork, the adult children protested adamantly. They would not accept Jan as the proxy, or consent to removing their father from life-support.
Moreover, they claimed that their father would never have agreed to end his life. Their position was intent on upholding the tribal tradition they knew meant a lot to their father. To cause the death of another was a great sin… And, they maintained that a person isn’t dead until the heart stops. Therefore, they believed that taking their father off life-support would be tantamount to killing him. The hospital staff involved in the case could hardly ignore their arguments or position.
To make things worse, Mr. Daraturo’s adult children accused Jan of forging their father’s signature on the proxy. This increased Jan’s outrage exponentially. Not only was she upset by their accusations of forgery, but she was outraged that she was being asked to betray her husband’s trust, or could possibly be forced to.
The meeting had been called by the family doctor, in order to update Jan on the situation. It took place in a small room on the MICU floor. We were all seated around a large table: Jan, several nurse administrators, the caseworker, a social worker, a nurse educator, and me. The patient’s doctor, Dr. Michel, arrived a little late. I was introduced as the chaplain on-call. I recognized no one at the meeting.
I was familiar with the MICU, since it was one of my assigned floors. I had noticed the patient, as I passed through the pod on my daily rounds. He wore an African dasheeki top, instead of the hospital jonnie. I had heard he was braindead and observed through the glass doors that he had no facial expression and was unconscious. He was a dark-skinned African, with a sinewy build, though somewhat diminished, heavy facial features, and thick, salt and pepper curly hair, tightly cropped.
Meeting Jan, his second wife, was a surprise. She was a petite, Caucasian woman, with a button-nose, slender-hipped, barely 5 feet tall, and I’d guess her age to be about 45. She carried a small patent leather shoulder bag, wore a Pendleton-plaid pleated skirt, and spoke with the mannerisms and refinement of a Connecticut Yankee.
Once Dr. Michel arrived, Jan, who had been sitting quietly at the table, released her pent up outrage with surprising force. In one hand, she clutched her cell phone and a balled up Kleenex, then, she slammed her other hand down on the table and cried, “Can you believe this? They accused me of wanting to kill their father!” She insisted that her husband wanted to die “with dignity,” and not remain on a ventilator. In a frustrated cry, she said, “He’s braindead, for God’s sake. And, I have the proof of what he wanted, right here in his health proxy statement.” She laid out the proxy on the table. “What more do they need?”
After giving Jan her full attention and listening compassionately to her concerns, Dr. Michel. spoke. She quietly explained that she had met with the adult children at an earlier meeting, and made it clear to them that the medical team agreed that any further treatment would be futile.
As the only novice at the table, I was taken aback by how complicated the situation was. I knew that the paperwork was important. But I could see that the division in the family would have to be addressed. I just couldn’t imagine what Dr. Michel could possibly say or do to make it easier for everyone. So, I sat listening, learning, and offering tissues and cups of water as needed.
I could see that Dr. Michel was masterful, sympathetic, and patient. She allowed Jan to vent some more, and then, explained that she had worked out a compromise with the adult children. Before launching into the compromise, Dr. Michel took the time to speak again, as a trusted family friend. She reminded Jan of her long relationship with the patient. She validated Jan’s love and dedication, by reiterating that she had witnessed it, throughout this long illness. Being reminded of the past two years and her sacrifices, Jan was finally overcome by Dr. Michel’s empathy and appreciation. Her rage faded to sorrow and tears.
More subdued, Jan continued however to argue her side. Artie’s adult children didn’t really care about him. She said, “I’m just so angry that they want to keep their father like this, when I know he doesn’t want this. He doesn’t want this. I have the health proxy. Why do we have to do this now?”
Dr. Michel replied patiently, “I know that you have the right to speak for your husband, and that you have his best interests in mind. You know him better than anyone. But no matter what I said … and I tried my best to get them to understand the state of his condition … I still had to hear what his children had to say.”
Jan said, “But do you know that they haven’t even seen him for two years? Not since we were married. So, now they start coming around. What do they want to do this for?”
The Nurse Administrator spoke up to say that she had seen families do this before. “Sometimes,” she stated, “people feel they have to make up for their behavior before someone dies. They may want to do something for their father, as a final act of love, or maybe acting out of guilt.”
Before Jan got too riled up, saying how guilty they “should feel, given their behavior,” Dr. Michel jumped in to say, “We can’t begin to understand the complexity of your family relations at this time. But right now, we have to come to some understanding, because your husband is not going to get any better. And he’s not going to like all this dissension in the family.”
After a brief lull, Dr. Michel finally described the compromise she had struck with the patient’s adult children. They had asked for more time to gather their relatives and siblings together from all over, in order to say goodbye. They asked that their father remain on the life-support for as long as this would take, about 24-48 hrs. Dr. Michel finished by promising Jan that her husband would die with the dignity he desired.
When Jan did not agree to the compromise, Dr. Michel countered calmly by expressing her concerns for Jan. “I’m actually very concerned about you, Jan. Do you have any family of your own to support you? Maybe you could take this time to gather your family and friends, to support you during this difficult time.” When I heard Dr. Michel present her genuine concern solely for Jan, I realized that this was the turning point of the whole meeting.
Jan responded with her first smile, saying that her children from her first marriage, her sister, and minister, were all on their way to Boston to support her. Encouraged, Dr. Michel decided to make a final request. She asked for Jan and her family to limit their visits to the morning. She said that Artie’s children had agreed to visit only in the afternoon. This way, she stated, there would be peace at the bedside, for the patient. Jan agreed.
When the meeting ended, Dr. Michel took me aside and asked that I remain as Jan’s advocate, for as long as this would go on. I agreed. The 24-48 hours turned into three more weeks. The first week after that meeting, Jan was no longer the patient’s legal proxy, but had been replaced by the patient’s middle son. Two weeks later, I met with Jan and her sister in the family room on the pod. She introduced me to her sister, who thanked me for supporting Jan, and I continued to visit with the sisters as often as I could on my morning rounds. Without the legal proxy, Jan was like a different person, much less stressed. She seemed relieved, or perhaps, resigned to the fact that she was no longer responsible for being her husband’s health proxy. Or, maybe it was just a sign of the beneficial effects that came with the strong family support she had amassed.
At our meetings, Jan expressed her continued disgust with her husband’s children and repeatedly accused them of acting selfishly and being cruel. But she had held to the agreement by coming every morning and avoiding any confrontation with the children, who came every afternoon. She also told me that her son had spoken to Artie’s children, but was unable to change their mind.
As the days dragged on, I observed the nurses one afternoon, vibrating the patient’s bed. The procedure, done twice a day to help the patient’s circulation, shook the patient like a ragdoll. At the time, I saw the patient’s children, who seemed content to allow the vibrating. They were sticking to the agreement, by visiting their father in the afternoon, either at the bedside, while working on computers; or in the family room, playing with their young children and eating. It seemed like a holding pattern was in place, indefinitely.
Although I had seen the adult children from a distance, I met them only once. On this day, I was passing through the MICU on my rounds, when I looked into the patient’s room through the glass doors. I couldn’t believe my eyes. Both sides of the family were inside the room, arguing heatedly from opposite sides of the bed. I couldn’t hear what they were saying, but the body language told the story of passion and aggression. Bodies were bent at the waist, necks over-extended, and the patient lie unconscious and helpless between them.
Without hesitation, in one swift move, I knocked and entered the room, interrupting them. Meeting each look with a forced kindness, I stared silently and waited. When they all had shed their distorted face, I spoke quietly, without equivocation, “We will now join hands (yes, reaching across the patient), and say a prayer for your beloved husband and father.” They immediately did as they were told. With all heads bowed, I led the families in the Twenty-Third Psalm. It was a short reprieve from the war, since the bickering resumed as soon as I left. But I had learned that sometimes, a chaplain has to take the bull by the horns. One month later, after more than 100 days, the patient was taken off the life-support and died.
In this case, the question of “pulling the plug” was complicated by two families with opposing views. In my subsequent reflections about the complicated questions that surround end-of-life decisions, I looked at other complications, such as the purpose of technology and the place of theology.
It seemed that advanced technology has a very good purpose. I had caveats. It should be applied not only to save a person’s life, but also to attain a quality of life that is a reasonable facsimile to what a person is accustomed. Furthermore, when it raises more questions than the problems it solves, I think that only those adept at critical thinking should be deciding and applying it.
This creates a whole different set of problems, as there are many questions and too few critical thinkers. For example, there are economic considerations about the cost of keeping someone on life-support indefinitely. There are mechanical devices that can keep nearly every organ working (for about $45,000 a day). Would these resources be put to better use?
Other questions that we are encouraged to answer in advance include: How does the patient feel about resuscitation? Does she want to be hooked up to a life-support machine? If so, for how long does she want to extend her life in that condition? What would she want to do, if her doctors agreed that medical treatment has become futile? What about breathing tubes, feeding tubes, sister morphine, antibiotics, or the supply of food and water? The problem with answering these questions in advance is that our answers might change, once we are incapacitated and actually in the throes of life and death. But, we can’t say that we changed our mind.
Most importantly, there is the big question, the one that no one can seem to answer: Is there a chance that dad will recover? I suppose this is one of those questions that could be laid at the feet of theologians, and those inclined to seek answers to the god-questions. As a believer, I have often wondered, where is God in all this? The only answer I can come up with is that God is where God always is, whenever disturbing questions arise; helping us find the answers. The Qur’an provides the following guidance:
“When that appointed time ends—no one can postpone or advance it. Every living thing will taste of death …” (7:34)
But I think we still have to become critical thinkers, if we want to survive the applications of technology or understand theology.